Emotional wellbeing in women living with HIV Women’s Networking Zone 2012

1. Emotional wellbeing in women living with HIVWomen’s Networking Zone 2012 Ulrike Sonnenberg-Schwan & Ophelia Haanyama Ørum Women for Positive Action is an educational program funded and initiated by Abbott Laboratories Women for Positive Action is supported by a grant from Abbott

2. Women for Positive Action Ophelia Haanyama ØrumSweden Ulrike Sonnenberg-SchwanGermany

3. Women for Positive Action Women for Positive Action is a global initiative established to address the specific concerns of women living and working with HIV The initiative is led by a faculty of healthcare professionals, women living with HIV and community group representatives from across Canada, Europe, Latin America and South Africa www.womenforpositiveaction.org Contact us: WFPA@litmus-mme.com Twitter: @WFPA_HIV

4. Women for Positive Action mission To empower, educate and support women with HIV and the healthcare professionals and community advocates/leaders involved in their treatment To explore the issues facing women with HIV and provide meaningful education-based support to respond to these needs To contribute towards an enhanced quality of life for women with HIV 4

5. Objectives of this session

6. Emotional health and the HIV journey

7. HIV is associated with significant emotional health challenges Adjusting to treatment and living with HIV Diagnosis and coping Care and relationships

8. Range of emotional health issues associated with HIV • Stigma • Psychosexual problems • Relationship challenges • Pregnancy • Menopause • Body image • Confidence • Depression • Anxiety • Coping problems • Trauma • Post-traumatic stress disorder (PTSD) • Neurocognitive impairment

9. How women experience HIV: the patient journey + Acceptance / moving on Starting treatment Disclosure (often avoided) Pregnancy, job loss, negative life events (at any stage) Side effects Improvement in emotional wellbeing Stigma and rejection Stigma and rejection Denial Depression(can continue) Diagnosis - optimal journey emotional disturbance and depression The journey is characterised by many emotional ups and downs and varies from woman to woman The Planning Shop International Women Research, July 2008

10. The challenge of . . . diagnosis Grief Denial Sorrow Fear Anger Acceptance

11. What support can women seek to help them minimise the emotional impact of HIV?

12. Existing peer support initiatives for women living with HIV

13. Disclosure in women living with HIV • Disclosure is a major factor in all aspects of life and recurs over the course of a lifetime1 1. Quebec project

14. In what way can disclosure have a positive impact on a women’s emotional health?

15. Initiatives to help support women who decide to disclose their HIV status Policy and programme approaches Counselling approaches Community-based initiatives • Train healthcare workers in HIV management • Establish more VCT services, including in rural areas and for marginalised groups • Reform laws on discrimination and confidentiality • Ongoing counselling and HIV support groups • Role play • Mediated disclosure • Involving women in HIV testing and counselling • Public information campaigns and community forums aimed at promoting tolerance, compassion and understanding, and reducing fear, stigma and discrimination VCT = Voluntary Counselling and Testing WHO, 2004

16. In what way can HIV affect women’s relationships?

17. Concerns for pregnant HIV-positive women HIV diagnosis during pregnancy HIV diagnosis during pregnancy Development of major depressive/ somatic illness Need for rapid decision-making Balance joy of pregnancy with news of diagnosis Experience surrounding diagnosis Expectation and preparation Possibility of abortion? HIV diagnosis before pregnancy Fertility treatment Discordant partner Baby’s HIV status Treatment effects Giving birth Feeding baby

18. Influence of HIV on a woman’s role as a mother • Disclosure to children • Confidentiality • Guilt/shame • Fear of passing infection to children • Caring for children with HIV • Adhering to complex treatment regimens • Stress of logistics of attending medical consultations • Managing childcare during periods of ill health • ‘Aftercare’ of children in the event of death • Migration • Family illness and other caring responsibilities • Secrecy around HIV

19. Disclosure to children • The decision to disclose HIV serostatus to one’s children is very complex • Rates of disclosure range from 30–66% • Possible concerns of disclosure include not wanting to scare the child, and wishing a care-free childhood for him/her • Benefits of disclosure may include: • opportunities to openly discuss the diagnosis and any concerns the child may have and to clarify misconceptions • providing the child with time to grieve • opportunities for the mother to gain comfort from her child Delaney RO et al (2008) AIDS Care

20. In what other ways can HIV affect women’s relationships?

21. HIV Related Stigma and Discrimination Ulrike Sonnenberg-Schwan, Germany

22. “Many people suffering from AIDS and not killed by the disease itself are killed by the stigma surrounding everybody who has HIV/AIDS.” (Nelson Mandela, 2002)

23. Definition of stigma Goffman defined stigma as . . . “an attribute that is deeply discrediting” and that reduces the bearer “from a whole and usual person to a tainted, discounted one”1 • Using the Goffman definition, stigmatisation is thought to exist when society labels an individual or group as different or deviant1 • Stigma is also viewed as “a process of devaluation of people either living with, or associated with, HIV and AIDS”2 1. Goffman E 1963; 2. Mahajan A et al, 2008

24. Disclosure, stigma and discrimination are among the many challenges facing women with HIV Relationships, independence, violence Stigma-related stresses, fear, secrecy Quality of life Disclosure-related stresses Diagnosis, coping, adjustment, responding to treatment Challenges for women living with HIV Discrimination-related concerns Parenting, pregnancy, children, carer responsibilities Ageing and the menopause Depression, suicidal thoughts /acts, emotional stress Risk behaviours Grief, loss and guilt Body image problems Keegan A et al, 2005

25. Discrimination can be driven by each different type of stigma HIV-related stigma Enacted stigma Internalisedstigma Perceived stigma Symbolicstigma Zhang Y et al, 2009

26. The multiple layers of stigma HIV/AIDS LGBT Drug use Sex work Promiscuity Ethnic minority Deadly disease Infection risk poverty Older age …

27. “Each day we have to live with it. It‘s not only HIV. It’s the things we have to deal with every day. First, I’m black. Second, I‘m a woman. Third, I was a single mom for a while. And I get social aid. So I give you all the reasons you need! It‘s like racism – you cant hide from it.”

28. Impact of HIV-related stigma and discrimination

29. HIV-related stigma and discrimination: Impact on wellbeing and health Sayles J et al, 2009; Vanable P et al, 2006; Rankin W et al, 2005; Rahangdale L et al, 2010; www.stigmaindex.org

30. HIV-related stigma and discrimination: Personal and psychological effects Vanable P et al, 2006; Sandelowski M et al, 2004; www.stigmaindex.org

31. HIV-related stigma and discrimination: Social and community effects Vanable P et al, 2006; Sandelowski M et al, 2004; www.stigmaindex.org

32. HIV-related stigma and discrimination: Partnership and family life effects Vanable W et al, 2006; Sandelowski M et al, 2004; www.stigmaindex.org; WHO, 2011

33. HIV-related stigma impacts on access to care and treatment adherence • HIV-related stigma may be associated with suboptimal ART adherence • 42.5% reported suboptimal ART adherence • this relationship may be partially mediated by lower mental health status • People living with HIV and AIDS experiencing high levels of stigma had over four times the odds of reporting poor access to care • 77% reported poor access to care and 10.5% reported no regular source of HIV care Sayles J et al, 2009

34. Empowering women to make a choice about disclosure

35. Disclosure in women living with HIV • Factors considered by women when thinking about disclosure1 • Disclosure is a major factor in all aspects of life and recurs over the course of a lifetime1 • HIV-related stigma negatively affects a woman’s willingness to disclose2 1. Quebec project; 2. WHO, 2004

36. Disclosure should be a personal choice Disclosure should feel like a safe event, where the benefits clearly outweigh any potential risks • Important to promote openness about HIV BUT equally important to protect human rights • Each individual should be assured that the result of an HIV test is confidential and that decisions about disclosure will be decisions that they themselves must make • Disclosure is a lifetime process, tailored to the individual woman • There are many levels and stages of disclosure, and no one path is suitable for everyone

37. Positive impact of disclosure Respects dignity of affected individuals Voluntary disclosure Maintains confidentiality Helps prevent onward transmission Beneficial results for individuals, families and partners Characteristics and benefits of disclosure Encourages access to HIV prevention and care services Increased adherence Leads to greater openness in the community Establishes trust between groups Helps reduce secrecy Helps reduce anxiety and depression Helps reduce stigma and discrimination UNAIDS, 2000, WHO, 2004

38. Factors that motivate women to disclose their HIV status • Ethical • responsibility • Seeking social support • Quality oflife Support from counselling • Concern for partner’s health 1. WHO, 2004; 2. Chandra P et al, 2003

39. How can we overcome stigma and discrimination?Discussion

40. Back up

41. Key target audiences for stigma prevention initiatives Logie C et al, 2011

42. The GIPA Principle Increased self-determination and personal development for women living with HIV • GIPA, Greater involvement of people living with HIV • Universal right to self-determination and participation in decision-making processes • Based on fact that direct experience and commitment have no substitute • no one can respect the interest of people living with HIV better those people themselves • Widely recognised and accepted • Should be implemented at all opportunities when working with organisations and individuals UNAIDS, 2007

43. Benefits of GIPA Increased self-determination and personal development for women living with HIV • Strong HIV organisations • Women with HIV engaged in and leading programmes • Those with HIV are recognised as experts • Increased self-esteem • Decreased depression and social isolation • Improved treatment adherence • Increased employability • Promoted overall health and well-being UNAIDS, 2007

44. Support groups and community organisations can combat stigma • Support groups can work together to reduce stigma, discrimination and equality in the community • In 2007, the Michael Stich Foundation launched an awareness campaign to reduce mother to child transmission, but the provocative images used were stigmatising and discriminating • The German Network of Women and AIDS and the Deutsche AIDS-Hilfe campaigned to have the two most discriminating images shown here removed • The organisations worked to ensure that • mothers were protected from stigma and discrimination • the campaign raised awareness of preventing transmission of HIV without impacting on the dignity of women and children with HIV

45. Faith-based organisations (FBOs) • Faith and religion can have a positive impact on wellbeing and emotional health1-3 • FBOs, such as tearfund, have the ability to influence the attitudes and behaviours of their community members, who are in close and regular contact with all age groups in society • Some faith groups provide an important source of comfort, friendship and practical support to those with HIV • There are a growing number of initiatives aimed at equipping faith leaders with the information and tools to challenge HIV-related stigma and discrimination in their communities 1. Ironson G et al, 2006; 2. Woodard E et al, 2001; 3. Ridge D et al, 2008

46. Supporting women to cope with HIV-related stigma • There are a number of strategies which a healthcare professional can use or suggest to help support women experiencing stigma Emotional coping strategies Problem solving strategies • Rationalisation • Seeing self as OK • Letting it pass • Turning to God • Having hope • Humour • Keeping active/busy • Joining formal or informal support groups • Disclosing • Speaking to others • Getting counselling • Peer support and education to gain knowledge • Modifying behaviour • Learning from others/following positive role models Makoae L et al, 2008

47. Overcoming the challenges of stigma and discrimination: case studies

48. AIDES – Campaign against discrimination • In 2006 a media campaign was launched to fight discrimination in France • Using famous personalities the campaign asked questions such as ‘‘Would you still love me as much if had HIV?’’ Line Renaud (French actress/singer) ‘‘Would you still come and see my concerts if I had HIV’’ Diam’s (French singer) • AIDES also have a project called: “HIV Positive Women in action” which aims to mobilize women living with HIV (http://bit.ly/vtZwVd)